Venting

Lighthouse_7

I keep forgetting things and can't find words fast enough when trying to hold a conversation. OK...I try hard to accept it but what really makes me mad is when I say to people," Sorry, Chemo Brain," they roll their eyes and say things like,
"Oh come on, that was almost 2 years ago."

The only reason that I even say that is because I am embarrassed that my once sharp brain and speech has been reduced to mush and I feel the need to explain!

I know it shouldn't bother me but today it did! This woman actually said to me when I explained that it may never go away..........................
Well, if I ever get cancer, then I'm not doing chemo.
OMG like this" brain thing" is so horrible, it's worse than treating cancer!

Sorry but I am so mad. Is it only us Kindred Spirits who actually understand. I wonder how many other people think these thoughts but are just too polite to voice them. Thank you all for being here because without all of you who KNOW I would feel like a freak.

I also know a lady ( pretty well ) that had rads but no chemo and she says to me...well I ddin't have chemo so what's my excuse.

Chickadee1955

Funny you would bring this
Funny you would bring this up....I had an appointment with my oncologist just yesterday and asked about 'chemo brain'. I am, and always have been, a word person. I love words. I read dictionaries for fun. I collect books on the origin of words.

One of the most frustrating and difficult side effects of cancer/chemo is the loss of 'word retrieval'. I will know exactly what I want to say and know there is a word that will say it, but I absolutely cannot bring it forth from my brain. I will end up giving very long explanations of the concept I am trying to convey until someone plugs in the missing word for me. It makes me feel as though one of the very 'special' parts of me has been stolen. I am not good at crafts, I can't play a musical instrument or sing, I can't ski or do so many other things, but I could ALWAYS write and speak with an enviable vocabulary and now......

As for others understanding....NO, they don't. They think it is the same as the occasional loss of train of thought or age-related, but I know me and my mind and it is NOT THE SAME THING! Even my darling husband, my pillar of strength through this experience, wants to relate my symptoms to things he experiences, but again, it is NOT THE SAME THING!

I also have experienced difficulty on the job with focus and concentration. Add that to the word retrieval and I'm sure more than one person has walked away from a recent conversation with me scratching their head and wondering were I went!

Feeling your pain,

Chickadee

New Flower

WE all know that cancer is sucks
and some people are very stupid too, making insensitive comments.
Sometimes I use a chemo brain card at home and we all laugh.
Wishing you a better day tomorrow,
Hugs

BioAdoptMom

People just don't think
People just don't think sometimes! (((((HUGS)))))

Nancy

RE

Thoughtless Folks
Oh I am so sorry you are feeling this way! Chin up gal you have fought the battle and come out the other end and if chemo brain persists so be it you are here and you have earned the right to not recall everything under the sun. I know it is frustrating and I wish I could take that away for you. You do not need to explain yourself, shoot everyone forgets stuff, if they are your friends they can wait while you find a way to express yourself and if they cannot wait well they are probably not worth chatting with in the first place.

Big Hugs,

RE

laughs_a_lot

cool second lady
That was a classy comment from the second lady you talked about. (What's my excuse) At least I think it was (because I don't know the tone). I think she was trying to normalize your difficulty so you didn't feel so bad.

I have some concerns on chemo brain. Here is why. I already have attention defficit disorder at present and seem to have gotten that issue fairly well under control between meds and some stratigies on how to conduct aspects of life. I got my Master's Degree in 2005 and have barely begun a proffesional life when this disease knocked on the door of my life. (Imagine getting a Bachelor's Degree and getting into a national honor society prior to discovering ADD. I worked my butt off harder than many students did to accomplish this.)

I work in mental health so I know a bit about psychotropic medications and how they work in the brain. I also take an antidepressant along with the ADD medication. The chemo is going to get to the brain too. How will this effect the already messed up neurotransmitters in my brain? What would be miraculous is if the chemo went in there and changed what happens with the neurotransmitters and reset them back to normal. I doubt that is the course it will take, but one can always hope. I have worked so hard to get my education later in life. I worked within my profession for 4 1/2 years until May of last year. Once I lost one of my two jobs in May (the professional one) I continued to work in the non proffesional job I had while getting the education.

Now having chemo may take away the brain power that got me this far. Will I take the chemo any way? He77 yes. I still have a lot to live for even if I never work within my profession again. However, I was the first one out of 8 children to get a college education in my generation. Having two parent who had blue collar work all thier lives this is something to be proud of. By the way they were smart too so I had a good gene pool to begin with. Now when chemo comes along and changes things like my brain funciton, I hope that I will still be the inspiration to my grandchildren to get that education no matter what. Chemo can do what it wants with me. Butt don't mess with the aspirations I have been able to instill in a generation who prior to seeing that one can really improve thier lives, was probably destined for a life of poverty. I guess I will have to count on those grandchildren to become the new engine of the train if Grandma starts to get mushy brians after chemo. Most of them will be able to remember the one prior to chemo well.

tgf

laughs_a_lot said:

cool second lady
That was a classy comment from the second lady you talked about. (What's my excuse) At least I think it was (because I don't know the tone). I think she was trying to normalize your difficulty so you didn't feel so bad.

I have some concerns on chemo brain. Here is why. I already have attention defficit disorder at present and seem to have gotten that issue fairly well under control between meds and some stratigies on how to conduct aspects of life. I got my Master's Degree in 2005 and have barely begun a proffesional life when this disease knocked on the door of my life. (Imagine getting a Bachelor's Degree and getting into a national honor society prior to discovering ADD. I worked my butt off harder than many students did to accomplish this.)

I work in mental health so I know a bit about psychotropic medications and how they work in the brain. I also take an antidepressant along with the ADD medication. The chemo is going to get to the brain too. How will this effect the already messed up neurotransmitters in my brain? What would be miraculous is if the chemo went in there and changed what happens with the neurotransmitters and reset them back to normal. I doubt that is the course it will take, but one can always hope. I have worked so hard to get my education later in life. I worked within my profession for 4 1/2 years until May of last year. Once I lost one of my two jobs in May (the professional one) I continued to work in the non proffesional job I had while getting the education.

Now having chemo may take away the brain power that got me this far. Will I take the chemo any way? He77 yes. I still have a lot to live for even if I never work within my profession again. However, I was the first one out of 8 children to get a college education in my generation. Having two parent who had blue collar work all thier lives this is something to be proud of. By the way they were smart too so I had a good gene pool to begin with. Now when chemo comes along and changes things like my brain funciton, I hope that I will still be the inspiration to my grandchildren to get that education no matter what. Chemo can do what it wants with me. Butt don't mess with the aspirations I have been able to instill in a generation who prior to seeing that one can really improve thier lives, was probably destined for a life of poverty. I guess I will have to count on those grandchildren to become the new engine of the train if Grandma starts to get mushy brians after chemo. Most of them will be able to remember the one prior to chemo well.

I'm president of the club
I'm president of the chemo brain club. Thank goodness there's no meetings ... because I'd forget to attend.

On a serious note ... it's a constant battle to keep from driving myself nuts thinking that it is NOT chemo brain and that it IS alzheimers ... since I'm 67. I tell myself 100 times a day that it MUST be chemo brain and that I do NOT have alzheimers ... but it scares me to death. It's been about 18 months since I finished chemo ... but I honestly don't feel any sharper "brainwise" than I did back then. I still work full time in an administrative position and I swear ... and as others have said ... the worst part of it is not being able to find words. I think I spend half of my time going through the alphabet ... looking for a word that I know I know ... but just can't think of. It is emotionally exhausting. And ... as far as my job is concerned ... thank goodness I work with VERY patient and understanding people ... because otherwise I think I would have been gone a long time ago. I ask the same questions over and over ... take notes and then forget what I meant by the notes ... have to ask how to do something that I could do easily before chemo ... but now ... there just seems to be too many steps involved and everything seems complicated for me.

I'd love to be able to retire ... but that's a financial impossibility right now ... and probably for the next couple of years.

It's just so frustrating.

hugs.
teena

CR1954

Me too...
I have the exact same problems with memory. Forgetting words, mid-sentence. Letting the dogs out and completely forgetting them. Turning the stove on & forgetting. It's terrible. And embarrassing. But it would not keep me from doing chemo again.

I try to help myself by writing myself notes, concentrating more on what I'm hearing or trying to say. Carrying a little timer to "remind" me when something needs to be done. None of them are perfect solutions, but it is what it is.

You're right, in that people who have not experienced it can't grasp the idea that this can go on and on. It's much like those who say "get over it, it has been long enough. Now move on". The ones who do "get it" are caretakers and family. My husband knows how hard it is sometimes, so he will remind me or even "cover" for me when I forget what I'm saying. God bless him.

We joke about it on a regular basis, but it really hurts inside that my brain lets me down so often. Again, it is what it is. And it is a trade-off for fighting to keep our lives. Yes, I would do it again.

Hugs,
CR

Lighthouse_7

CR1954 said:

Me too...
I have the exact same problems with memory. Forgetting words, mid-sentence. Letting the dogs out and completely forgetting them. Turning the stove on & forgetting. It's terrible. And embarrassing. But it would not keep me from doing chemo again.

I try to help myself by writing myself notes, concentrating more on what I'm hearing or trying to say. Carrying a little timer to "remind" me when something needs to be done. None of them are perfect solutions, but it is what it is.

You're right, in that people who have not experienced it can't grasp the idea that this can go on and on. It's much like those who say "get over it, it has been long enough. Now move on". The ones who do "get it" are caretakers and family. My husband knows how hard it is sometimes, so he will remind me or even "cover" for me when I forget what I'm saying. God bless him.

We joke about it on a regular basis, but it really hurts inside that my brain lets me down so often. Again, it is what it is. And it is a trade-off for fighting to keep our lives. Yes, I would do it again.

Hugs,
CR

Well ladies, Just reading
Well ladies,

Just reading your posts and nodding my head up and down made me feel a lot better. Today is a better day and thanks for letting me vent.
I know I'm blessed to be alive and if the brain remains a little messed up then so be it.

I guess it bothers me, like another lady said, that I wonder if I am getting Altzeimers or if it is chemo brain.
Even my family, who are very supportive, don't seem to always understand and I feel like they look at me with worried eyes.

Thanks to you all who responded and I hope I didn't forget anyone

Hugs,
Wanda

Katz77

Very interesting
It really is a infirmity. I was having dizziness for over 2wks, so tbey did an mri. I have proof of what chemo did. My ventricles are atrophyed. Getting flopy. Lol Know the spelling is messed up. Cant spell anymore either. Also "white matter". Thats around the memory area. Having a feeling alzhemiers is in my future. Well what are you going to do? I write alot of notes to myself.
Guess we're all in the same little boat. Good luck and try not to be down. Hugs, katz

laughs_a_lot

It is true
Last night I was on the treatemnt decison portion of the other half of this website. On there they have one of the side effects of chemo as either cognitive impairment or memory retrievement problems. I can't remember which one of those two it was, (wonder what I will be like after getting some chemo?). Non profeesionals really should give you the benefit of the doubt on this.

I wouldn't be suprised that oncologists try to downplay this somewhat for several reasons. Occasionally everyone has a few memory glitches so I suspect they don't want to attribute every memory loss or word retreival issue to chemo brain. Given that it can go away over time, it might not be wise for them to be quick to say it is chemo brain since it should go away any way. When it doesn't go away it might be a part of another disease process as well. It could also be a part of the aging process. Consider how much information you have stored in your brain by the time you are 70. If you have a hard time kicking out the outdated less useful infomation out of your brain, it will be hard to make room for newer more useful information. That is not to say even that all older information is useless either because History does have it's place. But remembering an old telephone number that was yours 3 homes ago is rather pointless. Yes at times I am plagued with remembering a few of these useless things myself. So continued memory loss could be a combination of several factors. Since we are all different, some of us may retain some memory defecits due to chemo brain because our unique neurological make up. Others with continued memory glitches could have other factors contributing to this. I think it is a mixed bag on this one.